Behavioral Problem?

Before anyone reads further, I'm going to admit I've been in a totally grumpy mood all week. Maybe it's the rain, my schedule interfering with gym time or too many girl scout cookies. Whatever. I'm just grumpy. So I start out my day by reading a great article about providing HIV drugs to communities in South Africa as a way to slow the epidemic and felt one of those great surges of hope. Then, I read a reader response questioning why money is being thrown at a behavioral problem. GGGRRRrrrrrr.

For starters, it isn't hard to see that the reader (R) doesn't know a lot about the complexities behind the variety of ways HIV is transmitted. R is also not likely to know anyone with HIV because, quite frankly, if I were HIV positive - R doesn't sound like the comforting sole I would seek out. So R remains in the dark. Odds are, R does know someone with HIV - R just doesn't know it. I wonder if R has ever had a conversation with someone who lost a loved one to AIDS? To me, that's an even sadder place to be.

The first thing that hit me when I read R's comment was a discussion from a Disciples Bible Study class years ago as we contemplated what the Ten Commandments really mean. We spent a lot of time thinking about how "Thou shalt not murder" can make the majority of us say "hey, I'm clean on this one!!" But we questioned - are we? The wounds inflicted on another person's sole through my words or actions can certainly slowly kill a part of who they are - a precious creation of God. Over 30 years, we have come so far in HIV medications so it is no longer a death sentence in itself. However, we still have the same stigma issues that existed 30 years ago. To me, THAT is the behavioral problem.

My dream is for a safe world - one person at a time. My dream is to find a cure - and, yes, that requires throwing money at this. I'm very proud and honored to share my resources and passion to try to make things better for even one person. I'm also very proud and honored that I have friends who have joined me in this. To each of you, thank you. You are so needed.

". . . treatment as prevention isn't just a buzz word floating around health conferences but a promising strategy for stopping HIV — even in a part of the world with one of the most severe AIDS epidemics." - NPR -- Jason Beaubien

However, WE still have to make it safe for everyone to know and manage their status. Yes, that stigma thing again.

http://www.npr.org/blogs/health/2013/02/22/172520096/the-whole-community-gets-a-health-boost-from-hiv-treatment

 

A Renewed Sense of Urgency

Last night, a few Team Saint Mark Cycling teammates and I hosted a fundraiser benefit for our AIDS rides. As with any event like this, you have highs and lows, disappointments and positive shocks. Pulling the event together with my cycling friends was pretty easy - especially when you have it at a great restaurant like Wahoo Grill in Decatur and have absolutely amazing talent for the evening in Steff Mahan. She and the trio played their hearts out and blew us away in terms of enjoyment from the performance. The folks that came seemed to enjoy themselves and it was a great kick-off to Valentine's Week.

Those of you who know me well know that while I will get in front of a group of people and talk - it's not a place I really long to be. I prefer to write my thoughts in the spirit of being an off-the-charts introvert. But I did get on stage with Steff, per her challenge to the group to make some donations, and led the crowd in the one song I know - the Gilligan's Island theme song. Yes, I know all of the stanzas. It was fun and Steff somehow figured out how to play her guitar to my totally off-key solo and get the crowd singing the chorus parts with me. The event was full of my friends and friends of my friends - so with a glass of wine in me and a red boa around my neck and Steff beside me - we celebrated raising about $1000 for my cycling friends Stephen and Todd.

In the midst of the fun and showing videos and hearing testimonies from Stephen and Todd, a new friend quietly told me she was there because she lost her brother to AIDS. I'm embarrassed that I never know what to say when I hear those words. I try to blame my high introversion for my silence but you would think that after all I have written over the past year, I would know what to say. During my training spin class today, I thought about the conversation - or silence - or poor response. I don't know how she feels and always hate it when people respond to others in pain with "I know how you feel because I ...." There is no way to know how someone else feels regardless of your experience because everyone's internal filter is different and no two circumstances are exactly alike. Perhaps I should have just stopped with the first three words I said, which were "I'm so sorry" - because I am. I truly am.

My new friend's brother just missed the drug advancements with a cocktail formula by about a year and those new treatments could have extended his life. I wonder how many others were lost within that window. I wonder how many others will be lost in this current window of having AIDS vaccines in clinical trials but not quite there yet. What can I do that really matters? I'm definitely not a scientist. Heck, I picked the only major at Clemson that I could find which didn't require chemistry. I can cycle, though, even if I'm a bit slow. I can raise awareness. I can raise funding. I can tell a new friend - "let me dedicate a day on the bike to your brother" - and I will be doing that. I can sing the Gilligan's Island theme song before a group of people. I can swing my red feather boa as I sing.

To my new friend - thank you. Thank you for reminding me what this is all about. If we have lost a sense of urgency in finding a vaccine, his story challenges that thinking. His story reminds me - we cannot rest yet, we are not done. On the day I ride for your brother, maybe I'll attach a red boa to my helmet and sing a tune in his honor!

Ways You Can Help

We all have different passions and limited resources.  If you share my passion for finding an end to AIDS and/or caring for people who currently have HIV or AIDS, please consider sharing your financial resources by sponsoring me on one of the 3 rides planned for 2013.  The links are below and every single dollar matters:

AIDS LifeCycle Ride: 545 miles

AIDS Vaccine 200: 200 miles

Charity Treks (AIDS Vaccine): 425 miles

Thank you!!

Never, Ever Give Up

On Friday night, I journeyed to East Coweta High School, where my high school basketball coach, Paula Jones, is celebrating her retirement. What a career she has had and what an influence she has made on the lives of many young girls - including me over 30 years ago. From her I learned to never, ever give up - regardless of how things look. I learned that sometimes that means leaning on others - teammates, friends, family, doctors, teachers, etc etc. I learned that sometimes that means you do the same for others so that they never, ever give up. I learned that you do your part and let others do their part - and together, you will win - or sometimes simply survive the day until things look differently. I learned that you have to focus on your goals and you have to expect the best and assume the best from yourself and everyone around you. These life lessons went with our little group of 10 onto the basketball courts back then. We didn't lose much - probably no more than the fingers on one hand during the 3 years I played for her. I think it's safe to say we still don't like to lose today. I know I don't.

All of these life lessons learned from Paula still drive me. As I shared the number of hours I spend in the saddle during an average day/week for the AIDS rides, my new cycling coach said something like - "you must have incredible mental focus." I replied, "Yep." I also thought - I have a reason. I'm fighting a battle I do NOT want to lose. I want stigma to be squashed. I want an AIDS vaccine to be developed. I want lives to be saved. I want dignity for everyone. I want children to have parents. I want AIDS to lose.

Seeing Paula and her interaction with her current players during Friday night's game reminded me of the importance of having good advisers and teammates. In last year's AV200, it was teammate Susan who helped me reach the finish line by helping me focus on reaching the next rest stop instead of the end - and her words went to California and New England as well. It was Todd  who kept us laughing. It was Chip who kept the riders safe. It was Carol who cheered us along in her car. It was Julie and Deborah who kept us energized. It was Sean who amazed us by doing his first century as a double century. It was Stephen with his constant, steady encouragement, drive and humor who always seemed to know just when another rider needed him and what they needed. There were the special people, like many of you, who supported the ride with your financial gifts - the dollars that will go to work to make AIDS lose. It is funding the researchers need - and there's no way I can write a check big enough. Your support for my rides helps me on that end. We are all a team and I don't want us to lose.

So, in the drive of corporation Chevron with the slogan "AIDS is going to lose" and the "never, ever give up" life lessons from Paula, and with the support of each of you - I will enter Month 2 of training with an even deeper conviction:

AIDS, we are going to beat you.

Still a Long Ways to Go

Why is it important to keep talking, to keep riding, to keep funding and to keep supporting the cause? Here's a portion from the words of an AIDS LifeCycle writer. We still have a LONG ways to go!!

From "The Ribbon On His Shoulder: Perceptions on AIDS in America Today"
By: Dale Cooper

"More than 30 years into the epidemic, one-third of Americans (34%) still harbor at least one misconception about HIV transmission:

- 1 in 4 people do not know that HIV cannot be transmitted through sharing a drinking glass.
- 16% of people think touching a toilet seat can spread HIV.
- 12% of people think swimming in a pool with someone who is HIV positive could infect them with the virus.

All those perceptions are remnants of an AIDS stigma, spurred by misinformation and phobia, that continue to exert a powerful sway over the American public. People who harbor these misconceptions about HIV transmission are more likely to say they would be uncomfortable working with someone with HIV: 43%, compared with 13% of those who know that HIV cannot be transmitted in these ways.

Additionally:
- Almost half (47%) do not know that a pregnant woman with HIV can take drugs to reduce the risk of her baby being born infected.
- About one in five (19%) are unaware that there is no cure for AIDS.
- 12% do not know that there are drug treatment options that can lengthen the lives of people with HIV.
- About a quarter mistakenly believe (or are unsure whether) Magic Johnson has been cured of AIDS (27%).
- 1 in 10 believe that there is currently a vaccine available to keep people from becoming infected."

Source for statistics:
Kaiser Family Foundation, "2011 Survey of Americans on HIV/AIDS: Summary of Findings on the Domestic Epidemic." Published April 2011.

To read the full story: http://experience.aidslifecycle.org/story/dale-cooper/ribbon-his-shoulder-perceptions-aids-america-today

I Care Because . . .

This has been a fun week of training with a few scheduled set-backs from more gum surgery. A few things I learned last year: (1) don't carry more up the hills than you really need. Thus, my weight loss is now at 3.6 pounds. (2) after the first 45 miles, you better have good strength training in your back pocket. Thus, I've upped the amount of weight training this year and work with my personal trainer once a week. (3) You better know why you care about this cause to meet the endurance requirements on the mind.

I described in my AV200 rider spotlight that I do these rides because: First, I believe that an AIDS vaccine is the only way to truly end this epidemic. Second, I believe that I am called to care for people currently dealing with the challenges HIV/AIDS and I personally love and know many of them. Third, I believe that stigma is flat-out wrong. Fourth, the stories of HIV/AIDS victims move me and I want the world to know how special they are/were.

I was struck by the picture below (found somewhere on the web) and wondered how you would answer this question. If you were standing along the ride route cheering on the riders (which you are by reading this!), what would your sign say? Give me some images to take into my training . . . I'd love to hear why you care about this cause. And yes, if all you can come up with relates to spandex and colorful jerseys, I'll take it - but I bet we have more!!!

 

Giants - They Do Fall

Every once in a while, I hear a story about group courage that amazes me. This is one. You may ask, "why does this belong in a blog focused on AIDS?" Well, to me, the church has the potential to be a healing force in the war on AIDS. In fighting stigma, when a church steps out and says "we will love you no matter what", we should find that more people have the courage to be tested and that HIV medications are worth taking. Churches can form a community and another source of connection - which, in turn, encourages many to take care of themselves because they feel valued. Churches can also do the opposite and unfortunately have from the many stories I have heard from people in my journey. There is a growing number of reconciling communities in the Methodist church (my Saint Mark is one) but when one arises from a conservative base and had to deal with a force of of hate from within, I consider them special and they have earned a place in my heart. While it is sad that being "loving" has to be hard, it is worth every step to get there. Congratulations and thank you, little Dunean UMC. You are very brave and will likely receive backlash now that the word is out. Be strong and remember: Giants. They do fall.

http://www.advocatesc.org/home/index.php?option=com_content&task=view&id=1156&Itemid=271